Blue or Not?

Autism Speaks is lighting it up blue, and so are many autism advocates this coming month. Some advocates are choosing other colors. Chances are, if we're impacted by autism, we're going to be acknowledging autism awareness month one way or another.

And there's a good chance that there will be some divisiveness in how some of us go about it. Whatever your position is on Autism Speaks, ASAN, etc., I respect your right to express that opinion.

Whatever we do, as members of the autism community (mythical or not, Harold), we'll continue to do the work we do every day to create not just awareness of autism, but acceptance, accommodation, and action to make the world a better place for our autistic family members and friends.

Here's to making the world a little brighter, a little softer, a little kinder.



 Heads and shoulders
One leads the way

Stopping to point out
a detail missed

Shoes on the wrong feet.


Wandering Code Examined: Semantics and Emotions In The Midst of Tragedy

"Despite reports of concern from caregivers and some studies, there are limited data on  population-based estimates and predictors of risk for wandering associated with ASD/DD." --ICD-9-CM Coordination and Maintenance Committee Meeting 

Wandering is a real issue with real, present-day ramifications. While it's important to not dive into knee-jerk reactions every time the news provides us with another example of wandering incidents and deaths, it does put a real face on the issue. It isn't some hypothetical what-if; parents and caregivers are dealing with it right now.

Because there is no research in wandering related to ASDs, in order to understand the ramification of the wandering code attached to ASD diagnoses, it is important to look at the research and information available on wandering in dementia patients, since the wandering code will mirror the already existing wandering code. In the CDC's March 2011 meeting agenda, wandering is discussed in relation to the already existing code for wandering: 

"Currently there are no unique codes to capture wandering associated with ASDs, DDs, or other conditions such as Alzheimer’s disease.  The concept of wandering was added to ICD-9-CM effective with the October 1, 2000 update as an inclusion term under at code 294.11, Dementia in conditions classified elsewhere with behavioral disturbance.   CDC (National Center on Birth Defects and Developmental Disabilities) has requested that new codes be created to better identify children and adults that wander associated with ASDs, DDs, and other conditions.  The additional code would not be a component of the ASD or other DD diagnoses, but could be used in conjunction with other applicable codes."

The research on wandering in dementia patients, while far greater than the non-existent research on wandering in ASD individuals, is still in its relative infancy. However, what has been studied is the use of physical restraints in dementia patients who wander. In 2006, the Alzheimer’s Association released the report “Falls, Wandering, and Physical Restraints:  Interventions for Residents with Dementia in Assisted Living and Nursing Homes.” Tilly and Reed looked at the existing research literature on falls, wandering, and restraints in patients with dementia living in residential care facilities and they concluded that physical restraints are inappropriate and ineffective. They write:
“Rather, residential care facilities need to assess the individual needs and abilities of their residents and devise individually-tailored, creative strategies to address these issues.  In addition, there are many health and functional problems associated with physically restraining residents, while no benefit is proven. Further research is urgently needed in the area of wandering, given the limited number of intervention studies with control conditions that are available from peer-reviewed sources.”

 One of the arguments that ASAN’s petition makes is that the wandering code “promises to label hundreds of thousands of children with "wandering" diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment.” While it’s apparent that restraints do happen, it is pretty clear from the Department of Human Health and Services that restraint use is not the intervention of choice in wandering.

In addition, in reading the various comments on the petition site and other websites dealing with the issue, it becomes clear that there is tremendous confusion in the community on what wandering behavior is. Some individuals seem to think wandering is simply moving about and that nothing should be done to hamper an individual’s freedom of movement. They rush to the judgment that care providers would use a variety of restraining measures to impede the freedom of movement. Obviously, our children’s behaviors and their appropriateness are dictated by the environment and the situation. In a classroom where sitting at a desk is expected, then getting up and moving about the room will not be considered appropriate behavior. There are other, more appropriate ways to deal with this than restraining a child; if that happens, that’s a failure of the adult in charge. Indeed, the focus in this particular camp is that the movement is purposeful and communicative and therefore not to be interfered with.

I’m pretty sure that’s not the kind of behavior being targeted by a wandering code; there’s a tremendous difference between physical movement that endangers no one and wandering behavior that puts individuals at risk of harm and death. Looked at from the perspectives of caregivers, wandering behavior has to do with the individual who leaves the home or the room without warning and wanders into traffic or into the woods. Clearly there is a difference between being tired of sitting and getting up and moving around and walking out of a safe, supervised environment and into a potentially dangerous situation, especially for a child or person who has 
difficulty attending to the various stimuli presented.

Recently an 11-year-old autistic girl wandered away from her school playground and walked more than 100 blocks in New York City. That’s wandering behavior and it’s dangerous, and the school officials knew because of a prior incident the month before that she was at risk for doing it again. A code, along with guidelines for how to handle wandering behavior, coupled with training for the school faculty and staff might have prevented this unfortunate situation.

Today Monroe News reports that a 4-year-old boy with autism wandered off from his backyard yesterday and drowned in the nearby river.

Clearly instances like these are ones we all can agree should be prevented. Are they lapses on the caregivers’ parts? People will certainly have their own strong opinions about this, but the reality is that we can do everything right, be proactive as parents and caregivers, and still have a child get out of our sight or our grasp, and tragedy can occur.Working to prevent these instances is an important goal for parents and caregivers. Working to prevent abuse through the use of unnecessary restraints should be important to everyone.

What remains unclear is how big a problem this is in general, how many instances of wandering occur that are never reported on in the news, and how a wandering code would help in this matter.

While being concerned about the potential ramifications of policies is reasonable, we need to focus on present day realities and how to resolve those issues currently facing us, and that begins with data collection. If the wandering code allows for the large scale study of medical records for the collection of epidemiological information related to wandering behavior and ASDs while also allowing for parents to receive training and resources relating to the prevention of dangerous wandering behavior, then the code is a good thing. Concern regarding the use of restraints needs to be fought in relation to real-world, present-day situations. Mandatory training on the appropriate way to redirect those individuals who wander without physically restraining should be called for, and even more importantly, training programs should be funded.

I see no reason why both concerns, the concern for a code that will help measure the magnitude of the problem while allocating resources for parents and institutions and the concern that individuals not be physically abused, cannot be addressed at the same time.

The summary of the March 9-10 meeting of the ICD-9-CM Coordination and Maintenance Committee Meeting  includes the following about wandering:

Favorable comments for option 1 included that it is more specific to the problem described.  If the intent is to assign a code for wandering, in addition to the underlying cause, it was recommended to add a use additional code note at the codes for the underlying disorders.    It was also recommended to add a use additional code note at code 294.11, Dementia in conditions classified elsewhere with behavioral disturbance since wandering is listed as an inclusion term at that code.    Dr. Linzer, AAP, stated a preference for option 2 and likens it to patients with a fall risk who need extra health resources for monitoring.  He said he prefers locating the code in subcategory V49.8, perhaps at V49.80, although he said that the proposed V40.3 is OK.  He also suggested including the terms Alzheimer’s disease, dementia, and developmental delay in the code first list.  The question was raised as to whether this code would apply to children who wander away from home, for example early in the morning before parents are up; it was suggested that was not the intent, so for such cases there should be a note to omit code.  
Another question was whether this code would apply to patients who escape from a lock down mental health unit. A question was also raised as to whether this code would apply for drug abuse, or whether that should be excluded; the issue should be considered.  It was indicated that these examples were not included in the intent of the code as proposed by the requestor."

Mondays Come Too Soon

(last week)

The wee one is fully covered by the blanket this morning, so last week's picture will have to do. She goes to bed early, and is generally asleep no later than nine, but 5:30 is still terribly early (and yet on the weekend, she's up at that time raring to go!), so every morning goes like this. She toodles out dressed and curls up on the couch under the blanket and goes right back to sleep. Her brother's being sweet and putting her socks and shoes on her while she sleeps. Won't she be surprised when she wakes up? (she didn't even notice; I guess now she'll expect to wake up with socks and shoes on?)

I understand her desire to just pull that cover up and shut the world out for a little longer; I really do. I had years of homeschooling and the chance to do that; after Rick was up at 5, when he was in the military, I'd do just that, pull the covers back up and sleep till seven or so and then the boy and I would spend the long hours together working to unlock math and reading for him; later the girlies were added into our routine. There were distinct advantages that I tried to hold on to and appreciate at the time so that when that time was over, I'd be able to look back and say I'd lived it fully. Still, the idea of sleeping in holds allure, even if the reality is that I don't even do that on the weekends when I can.

But back to sleepy girl and her ritual; Mondays are the hardest because the two day break makes it more difficult to move quickly and to adjust. Tomorrow will be easier on her, and each day after will be, too. There'll be less tears, less whining and shorter naps on the couch, and then we'll get to do it all over again come next Monday. One of these days, I'll join her on that couch! Of course, by then it will be summer, and she won't want naps on the couch, will she?



Blooming where we find ourselves.


Autism, Community, Personality Traits, and the Chasm That Threatens

Spend anytime in the online autism community, and you'll find a rich cast of characters offering a diverse perspective on what it means to be autistic. From clinically diagnosed autistics in early adulthood to late middle age to individuals who have self-identified as autistic, I've had the chance to read over 130 autistic bloggers on the directory, in addition to other autistics whose writings appear in print, on websites, forums, and facebook. 

In addition to these bloggers who've enriched my perspective on ways that autism can manifest and be expressed at the individual level are the hundreds upon hundreds of family members who blog, write, and comment about how autism in a loved one affects the family as a whole. Right now, we have about two hundred more family member blogs than autistic individual blogs on the directory, although we are always working to increase the representation of all individuals impacted by disabilities, not just autism. 

Kathleen and I have an open door policy, and so if you scroll through the blog listings, you'll see a wide array of perspectives and belief systems. We have bloggers who believe things we personally disagree with strongly, but we think that the best thing we can do for the community is to provide everyone with the chance to get the support they need, to provide access to others with similar interests and needs.

One of the things that at least some of us notice in navigating the online autism community is just how nebulous the line is between being autistic and being NT. Many of the family members who don't identify as autistic are so close in symptoms, issues, and problems as to be indistinguishable from autistic relatives. Many parents admit that they're BAPpy (broad autism phenotype); we can see where our children got their issues (and strengths) from. That ability to recognize similarities in ourselves and our children has to ease the need to find a cause, make it less likely to go out on a limb when looking for answers and remedies. Some parents have come to recognize their own autistic traits while working with their autistic children to help them overcome issues that impair functioning.

Some folks, a small minority, have self-identified as autistic but may not actually be autistic; there are often heated battles and attempts to undiagnose or rediagnose those who have identified themselves as autistic. Parents weigh in, judging some autistics too high functioning to qualify. It can be a very nasty discourse. While very involved and certainly of profound importance to both the individual being questioned and to those questioning, I can see no good that can come from playing online armchair diagnostician. Are some people less than honest in their portrayals and identities? Probably, but I think that despite the ease of lying online, most people are trying to be honest and genuine in their interactions. I assume that to be the case until they show otherwise. Are some individuals possibly incorrect in their belief they have autism? Of course; self-diagnosis carries with it real risks of being mistaken. For an issue like autism, is it a problem, though? I guess that depends on what the person does with that belief. I personally have no interest in playing that kind of guessing and doubting game and refuse to wade into personal narratives. It's important to remember, though, that it is an undercurrent of our online community, and another way in which we are often divided.

One of the other divides is the habitual contention that arises between family members and autistic individuals in the online autism community over the question of who speaks for the autism community; epic debates have been posted on blogs and forums fighting this question out. This is not likely to change anytime soon. I'd argue that no one speaks for anyone else, nor is there any need for one to claim one speaks for the group; the whole reason for blogging is to represent one's own perspective. 

Seeing the online autism world as a set of binaries is a false dichotomy at best: anti-vaccine/pro-vaccine, pro-cure/anti-cure, biomedical/behavioral therapies, autistic/neurotypical. There aren't clear dividing lines, and the need to continue to see the community and its various members as members of a particular side causes all sorts of weird falling outs; there seems to be a real problem with seeing people as individuals who have their own opinions which cross all sorts of boundaries and lines. Sometimes, long established relationships can be ended swiftly by a difference in opinion despite a wide body of issues where there is agreement. In other cases, odd alliances can occur where people despite being on opposing sides in one of the autism dichotomies come together to work on a larger, more important goal. 

It's never boring, that's for sure.

One of these divisions in the community is whether non-autistic individuals can ever understand what it means to be autistic, coupled with the division as to whether autism is a cluster of personality traits or a disability to be mitigated. Many autistic individuals identify deeply with their autism and it is who they are; some are not so tightly attached to an autistic identity and see both the good and the difficult associated with various autistic traits, while some autistic individuals identify closely with their autism but see it solely comprised of negatives to be cured at all costs. Those can make for some fascinating discussions, to say the least. 

When you add in the various family members whose opinions range over similar territories, it's a wonder any of us find a way to communicate with each other. It certainly explains all the various conflicts the community finds itself engaged in at any one time.

But what of this idea of autistic traits as personality traits, as some segments of the autism community posit autism to be? If it's a different neurological wiring and it doesn't rise to disability, just difference, then this would seem to be a fruitful area for research. Wakabayashi, Baron-Cohen, and Wheelwright (2006) examined the question of whether autistic traits as measured on the AQ and personality traits as measured on the NEO-PI-R are related. While there were some particular common areas (high neuroticism, low extraversion and conscientiousness), the researchers tentatively conclude that autistic traits might best be viewed as a "sixth factor of personality": "[f]rom the results obtained on the AQ and the NEO-PI-R, it is difficult to argue that autistic traits are just a part of the major personality dimensions."

It's clear that Baron-Cohen and his fellow researchers have a reasonable basis for concluding that autistic traits exist on a continuum; other research on milder autistic traits in family members bears out the idea that there is no clear dividing line between autistic and non-autistic and considerable overlap in traits. Baron-Cohen has written in the past that Asperger's is better conceived as a difference in cognitive style than a disability, noting that individuals with autism with an intellectual disability obviously have a disability (sure to be another area where there's a divide). 

Individuals like the ones Baron-Cohen is describing with Asperger's and HFA are capable of living independent lives with minimal to no assistance and may indeed represent a sixth personality factor; however, there can be no denying that a significant majority of those on the spectrum are without a doubt disabled. It is possible that these individuals may be exhibiting personality traits writ in the extreme and coupled with intellectual deficits and other co-morbid conditions that work to make those traits more intense and dysfunctional, leading to the similarity in traits across the ever-widening spectrum. While possible, I think it unlikely to explain the most severely disabling cases of autism. I'm afraid it's a comforting thought for many to believe that the most severely disabled, the most vulnerable, are really not, if only ways were found to help them communicate (leading to support of debunked facilitated communication). Facing the reality that there are a significant number of individuals who are severely handicapped and dealing with intellectual disability along with their autism is daunting.  

Thomas Armstrong argues in his book Neurodiversity that some traits now labeled as disorders in the DSM may have evolutionary adaptive value and uses anxiety disorders, bipolar, schizophrenia, and autism as examples. A little bit of anxiety might keep one alert, on one's toes, and more likely to perform more quickly, but an overabundance of  anxiety can be crippling. In the same manner, perhaps a small amount of autistic traits may have an advantage, but an abundance can be devastating. Wishing otherwise will not make it so. Hard work, dedication, and a commitment to humane care that honors the autonomy of the individual while providing the necessary supports can certainly go a long way towards mitigating disability and helping to provide the most severely disabled a good quality of life.

The one thing that becomes more apparent in the straddling of two different domains, that of the autism community involving the autistic individuals and their family members and that of the research/medical/psychological community, is that there are at least two fundamentally difference conceptions of autism going on: one where autism is still discussed as a disease and disorder and its polar opposite, that of autism as difference. It's not quite that neat, of course, or easy. Some researchers like Baron-Cohen straddle domains and divides, seeing both the difference and the disorder. Some family members and individuals do so, as well. If there's one thing I'm sure of it's that the autism community isn't going to get less messy anytime soon. Ignoring the reality of serious disability only makes the problems we face as a society all the more unlikely to be resolved successfully. 

In the meantime, as we wade through the murky waters of competing agendas and disparate ideologies, forging community, building support, and creating alliances that bridge those messy and capricious divides must continue; perhaps in that way we can see the forest for the trees.


Wakabayashi, A., Baron-Cohen, S., & Wheelwright, S. (2006). Are autistic traits an independent personality dimension? A study of the Autism-Spectrum Quotient (AQ) and the NEO-PI-R. Personality and Individual Differences, 41(5), 873-883. doi:10.1016/j.paid.2006.04.003

Iris in Bloom, Aphrodite and Buddha


This is Me Meme

Kathleen has given me a fun meme to participate in. :-)
  • Ask your child to draw a picture of you. It doesn’t matter how old they are…
  • Post the picture on your blog.
  • Call it the ‘This is Me Meme’.
  • Pop over to here and add to the linky.
  • Then tag some others.

So I got the girls busy. And they decided they had to draw their daddy, too.

Rosie's take on me.

 Lily's take on me. She's into equations right now.
Sweet on them both to not draw me as round as I really am.
 Rosie's take on Rick.
Lily's take on Rick.
Love what they do with his hair!

So passing this on to others, although they are under no obligation to play along.






Autism Awareness

This morning, Bobby was awesome! He accepted the proclamation and spoke to the assembled audience at the City Hall meeting and said, "Thank you." It was a great morning.

Yay, Bobby!

And in the car on the way to the center, he remarked that he wish more people knew autism wasn't a disease (the proclamation wording represents established ways of discussing autism that many inside the community find objectionable). We discussed that part of increasing awareness and acceptance is getting people to rethink about autism and to change the language and the perspective; by being there, receiving it and speaking (although very briefly), Bobby put an adult face and an adult voice on autism today. Two other families were there, as well, with younger children. Two of the three news stations were there and covered it; so those who watch the news tonight will hopefully get to see that, get to see three different individuals with autism.

It was indeed, a big, exciting day, and I am so proud that my son was there and was a part of it.


Pride and Joy

Tomorrow is a big, exciting day, as Bobby told his sisters this afternoon. He gets to accept the Autism Awareness proclamation from the mayor tomorrow, which will then hang at the day center he attends. His dad and I will be there with him, and I'll have extremely leaky eyes, just as I have now writing this. It's a big deal, both to him, and to us, to stand with him and to get the chance to thank our city for providing for more than three decades a center for the mentally and physically challenged to attend. It's been a part of our lives for the last eight years and it's made a tremendous difference for Bobby and our family. We will be forever grateful that our city provides this for a little over a dollar a day (and that fee's only been assessed for the last few years; before that the center was absolutely no charge). Bobby's grown, learned, matured, and even looking back at this post from October of 2009, the changes are obvious. He has become more confident, more independent, and more capable. He's learning to cook and often cooks the family meals, always with our appreciation for his willingness to try new things. He helps at the local animal shelter one day a week and cares for the cats. He helps with lunch at the day center, as well.

I could not be more proud of the man my son is. And I will be leaky eyed and beaming tomorrow.

Sunday, October 18, 2009

There's a shovel in there somewhere

Seriously, there is a shovel in there somewhere. My garden remains, for the most part, unattended, ignored, shoved to the side as if it no longer mattered. My gardens, over the last two decades in the various places we've lived have been my visible reminder that what I do makes a difference. My gardens have given me peace and hope, as they have been visual reminders that our work, our careful tending has a demonstrable impact. There were many years, so many years, in my bright boy's soon-to-be two decades where it felt like no progress was made, no developmental strides occurred. My gardens gave me the fortitude to continue my work with my son (and later my garden girlies), with the hope and the belief that careful tending matters, makes the difference.

There's no real miracle story, no one day the bright boy was normal, here. He's a vibrant, sweet young man who has carved out a good life for himself at the day center he attends. He has a best friend, he's had the good fortune to have three girlfriends at the center in the past year. He had a first kiss a year ago, his first date a few month ago. His goodness shines from him. I am proud of him, of the man he is growing into.

The girlies thrive, as well, happy to go to school, happy with the lives they are working so hard to create for themselves, and I am for the first time in my adult life able to spend my time on my work and on working towards a new career, full-time work and the chance to tend new gardens of different kinds.

Like my garden outside which, although no longer time-consumingly tended, continues to grow and evolve, with a wild, chaotic and yet beautiful flowering, my children grow and bloom in their lives. They don't need my complete absorption and assistance now. The years of careful tending are paying off as they move forward into their lives. Yes, they still need some spot tending. But they don't need all of me anymore to thrive.

Autism, in all its varieties, does not have to keep a child, a person, from thriving. Parents who see autism as shackles on their children, as a thief in the night, miss the point. Miss the child. Miss the person. Miss the shovel, I suppose. We are a complex waltz of neurons and neurotransmitters. Of glial cells supporting the wonderful electrical dance. We are all-or-none kinds of people, and yet many of us miss that, miss that who we are is ever-evolving, that we are a part of a convoluted, incredible tapestry. We miss the beauty in the flowers blooming crazily everywhere when we focus on the weeds that peek out beneath the blooms, when we focus too narrowly on what we are missing or need to do instead of looking at the totality and what we have now.

And I would add, today, in what can and will be if we have faith and work hard.

Blehs and Baggage

You ever have one of them weeks where it's just bleh?  I wouldn't say I had a bad spring break, but that there were pockets of distinct blehs. The girls were sick throughout spring break and my youngest's missed the first two days back to school this week; she feels fine, but she has a rash from the virus that lingers, so she toodled off to to work with me. She's dressed and ready for school today, but she's fallen asleep again, lying on the couch, and I'm reluctant to disturb her until there's absolutely no choice. We may attain meltdown state when I do wake her, but she needs to go to school, and I need to go to work, and she's not sick, so we'll face the meltdown if it comes.

It's funny how things that were issues with your other children can cloud your perceptions. Bobby was a nightmare to wake up; we avoided it at all costs. He'd scream for hours nonstop if awakened and when he could crawl, if you woke him up, he'd scream and crawl to a wall and headbang. It was godawful. Rosie's never been that bad. We'll get tears and whining, and it won't be pleasant, but it won't be godawful. And truth be told, even though there's a part of me that still clenches, tightens up in anticipation of a Bobby moment, it's been more than a decade plus since Bobby's done that. I'm still wired to react to it, to anticipate it. I'm still conditioned, set to respond to a stimulus I fear, but a stimulus that never comes.

In other words, I've got baggage, baggage that accompanies me with each child, even though it's not related to that child. It's not just as a parent, though. Each class conditions me, and I carry that baggage into other classes whether it applies or not. Every situation I face that's similar to one in the past will mean that baggage is there, too, even if it doesn't apply. And it's not a conscious thing; none of us consciously choose to bring all that weight, all those issues, all those experiences into each new one. We do it because we're wired that way, always ready to use what we've previously learned, ready to avoid the pitfalls, the perils, and I suppose, the Penelope Pitstops, too. It doesn't always work, and sometimes it causes bigger messes than if we'd left all that baggage in the past.

So does my internal cringe anticipating Bobby-sized meltdowns coming from my sleeping Rosie ring true, or do my experiences with Rosie? As I've written this, worked through some of the bleh I'm feeling, we've awakened Rosie, prompted her to go over to the table to eat breakfast, which she did crying and towing her blanket along. She got over there, decided she hadn't asked for what was there (she eats the same thing each morning), and she's back on the couch, blanket pulled overhead, asleep again. We've still got thirty minutes before we have to walk out the door, so we'll keep working at her, working at chasing the blehs away, and working at leaving the baggage at the door.


Monday Madness

Back into the breech once more? Spring break flew by but at least spring is here where I live!

Ain't that a face?


Moon and Sky

Friday night a storm moves in.

Raindrops start to lazily fall.

Lightning lights the night sky (but eludes the camera).

The clouds reveal their power.

They loom overhead.

The clouds remain on Saturday.

But have mostly moved on by night.

This morning, the moon hangs in the western sky.

But the sun hides behind clouds in the eastern sky.